Tag Archives: Cerebral Palsy

When Pramod Thapa walked into the Sunburst Lodge at Sun Peaks Resort, the British Columbia ski hill I visited last weekend as part of a tasting tour of BC wine country, I recognized his gait immediately. He doesn’t have the typical cattywhompus walk of a kid with cerebral palsy; at 21, he’s been fortunate enough to progress into a more typical movement pattern that comes off as a young male swagger. Still, for someone familiar with CP, it’s evident. Yet Pramod also moves like a ski racer—shins pressing against the fronts of the boots when walking, using their natural support to avoid the awkwardness inherent to wearing ten pounds of metal and plastic on each foot.

Pramod (pronounced “promo”) stopped short when the woman I was skiing with, Canadian ski racing legend Nancy Greene Raine, flagged him down. She realized that as the mother of a budding adaptive skier with cerebral palsy, I might want to meet him. Pramod perched one Lange boot on its heel—a typical racer’s resting posture—and shook my hand. When he started speaking, I realized that unlike Graham, he has a major speech impediment. He can speak well enough to communicate, but only if the listener has had, say, a few years’ experience tuning in to how the general population with cerebral palsy communicates. Pramod struggles to hug his mouth around vowels, and stumbles over consonants. Listening to him speak requires intense concentration, but he has a lot to say.

As we huddled around the hot, cottony sticky buns the lodge pulls out of the oven mid-morning every day, Pramod and I talked about his ski racing history. About how after immigrating to Canada from Nepal as a kid, an adaptive ski instructor recognized that he might be the type to enjoy skiing. About how and whether we should go about transitioning Graham from a sit-ski guided by an instructor holding tethers to a sit-ski he guides himself using outriggers, which are like hefty ski poles with extra tiny skis at the bottoms. About how now, in a bid for the Canadian paralympic alpine team, Pramod is having to fight for the right to use kids’ skis, instead of the regulation (read: longer and heavier) men’s skis the other guys he competes against use.

Pramod comes from a long line of sherpas. He can’t be more than 5’2”, and he must weigh 100 pounds soaking wet. I can’t imagine a person his size racing on the same skis my six-foot-something brother and father use. As we talked through the issue, he used his hands—hands seemingly unaffected by cerebral palsy—to describe the methods he’d been using to pressure the smaller skis around the turns in that day’s slalom and GS training. Fingers straight, hands tilting in parallel to mimic the skis beneath his feet, Pramod looked like any other ski racer talking shop. I realized that in a world where his body and his speech likely often prevent him from participating in a typical way, he has found a sport where he can use his hands to communicate the same way everyone else does. He’s found his sport. I also realized that when it comes to my own kid, it’s more important to me that he learns to love a sport than that he learns to love what I’ve long considered my sport.

Which is why this weekend, along with something like a third of all Americans, we’ll be watching the Super Bowl. In an unpredictable combination of rare genetics, Graham has inherited a love of football. We don’t know how. We don’t know why. He “plays football” by knee-walking to and fro across the living room floor, hurtling his body against the couch or a chair or the dog occasionally, claiming touchdowns and wins according to rules we don’t understand in any way. But he loves it. So it seems like this year especially—when the Seattle Seahawks kick off their second consecutive Super Bowl—it makes sense to sit down and watch. And it makes sense for me to sit down and learn, the way Pramod’s parents are likely doing also, that it doesn’t matter what gets your kid fired up. What matters is that he’s fired up at all.

I’d have photographed this recipe on a Seahawks jersey if I could, but we’re not big enough fans to have that sort of thing. Nonetheless, when Super Bowl XLIX kicks off this weekend, we’ll be eating wings with millions of others, smothered, in our case, with butter and harissa. You can use a store-bought harissa for this, but the homemade kind from A Boat, a Whale and a Walrus works spectacularly. Note that each harissa will vary in spiciness, so you may need to adjust the heat to your own taste. I made this batch knowing there will be kids at our party on Sunday.

Preheat the oven to 475 degrees F. Line a baking sheet with parchment paper and set aside.

Stir the melted butter and harissa together to blend. Divide the mixture between two large mixing bowls. Add the chicken pieces to one bowl, stir to coat the wings, then spread them out evenly on the prepared baking sheet.

Roast the wings for about 20 minutes, or until the wings are bubbling and crisp at the edges. Transfer them to a paper towel-lined plate to drain for just a moment, then add them to the fresh bowl of harissa butter. Stir to coat the chicken, then transfer the chicken to a platter and shower with sea salt. Serve hot, with the yogurt on the side for dipping.

“Balance isn’t something you just get,” said my favorite yoga instructor. She’s forever coming up with these isms that sound so obvious rolling off her tongue I feel silly for never having thought of them myself. “It’s something that comes and goes.” We’re crouched in eagle pose, one of flow yoga’s hallmark awkward balances, where the arms are completely intertwined at shoulder height and the standing leg gets all tied up by the free leg. There’s nothing elegant or agile or birdlike about it for most of us, but as our wobbles get smaller and the grunters stop grunting, we relax into relative calm. We are not eagles, we are warped, panting humans. But we are finally still. The teacher continues. “Balance is what comes when we let go of needing balance. When we normalize the fear of falling.” My mind reels. How can I not need balance when I’ve morphed into a human twist-tie? “Remember, falling is okay,” she promises. Good thing, I think.

To be honest, I didn’t really like that class on Saturday. There’s something about walking into a darkish yoga studio when it’s 75 degrees and sunny that feels inauthentic for me. But I did really like that toward the end of the class, Leisha focused on balance. Because her words, spoken and digested when I was really supposed to be not thinking at all, helped me process the fears and worries of my previous weeks.

See, we just started kindergarten. (I know: I’m not in kindergarten, my son is. But the process is certainly family-wide. Ask any new kindergarten mom; we’re all crying or screaming at our husbands or getting hit by our normally gentle children.) I wasn’t worried about Graham when he settled in for his first day. Sure, there were details–where he could put his new walking sticks, and how he’d get to the playground, and whether he’d need help in the bathroom, and why he seemed for forget, so suddenly, how to write his name–but ultimately, on the first day, I didn’t worry a bit about his safety or happiness. He stumbled off excitedly after his classmates, falling occasionally, oblivious to how the school’s well-intentioned mind–and heart-balancing slogan, Got Balance?, mocked him from the back of his school t-shirt as he tottered town the hallway.

The start of kindergarten was much more of a personal crisis for me. On the second day, the assistant head of school called us into her office. “This is going to be more difficult than we expected,” she admitted, eyes grave. She wanted to strategize about how to be patient with Graham’s slower pace without sacrificing the academic time the other kids deserve. My husband and I nodded, smiling, trying to strike the right chord between We told you so and Oh God, what happened? On the fourth day, she called us in again. They’d paired Graham with an intern every day that first week. We think it would probably be best to hire a movement aide for Graham. He’s a trooper, but traversing this school is just too exhausting for him and too time-consuming for the class.

Ultimately, it was the obvious choice. Having someone sweet and strong and kind and interested in Graham’s success dedicated to helping him would make kindergarten work not just for Graham, but for the whole class. But when we heard those words–the ones telling us that despite making huge leaps after a summer of huge efforts he still wasn’t going to hack functioning in a classroom full of typical kids without some serious help–we sagged. How could we tell them that we were thrilled with how fast he was moving? That Graham’s physical therapist said he’d never seen a kiddo adapt to forearm crutches so quickly and easily? That given what we’ve seen from Graham, we were sure the weeks to come would bring big improvements? We were pushed off balance. It felt like we were falling down, all of us together.

My friends didn’t seem to understand. “He’ll be fine,” they assured me. Of course he’ll be fine. Graham is nothing if not a trooper. We’ve found the best aide I could imagine, and Graham seems to understand that he now has permanent support. But he’s also clearly old enough to begin grasping that he needs extra help where other kids don’t, and that hurts a mom’s heart. It hurts like falling.

The question, for me, is whether (and when) I’ll be fine. Whether I’ll find the balance that now, in hindsight, we seemed to find so gracefully and easily within Graham’s preschool. Whether the aide will gain his own instinct with Graham, the way so many other parents and teachers have in the past. Whether every single one of the new kindergarten parents will eventually be able to look me in the eye (and when it will stop mattering to me what they think). Whether I’ll fall every time Graham does, and whether I’ll be able to stand back up as quickly–and with as much courage and as big a smile–as he does so many times every day.

These are the twist-tie days, when I feel like I’m falling almost all the time. Every morning now, I do a little yoga. It’s not the physical kind. (There’s not even any sweating, which is nice.) I just repeat my little mantra: It’s okay to fall.

Then I start a new day, hoping I can let go of needing balance at all. Knowing that someday, I’ll find it again.

But wait, that’s putting Graham’s differences before Graham, isn’t it? Can’t I start the email by showing how normal he is?

This morning, our son Graham threw himself onto the ground, kicking and screaming, because I didn’t use my maternal ESP to divine exactly which way he wanted me to design his breakfast plate, and the pomegranate seeds were totally in the wrong spot.

Ugh. Now he’s also a brat.

This might be the hardest thing I’ve ever written. It’s an email to the parents of all the kids in my son’s new preschool classroom, detailing what’s special about our child and why, and laying out some tender ground rules for their kids to learn—no pushing his walker down the stairs, etc. I’ve had it started for a good week or two, but procrastination has gripped me hard.

Everything feels hard all of the sudden, for some reason. It’s hard to get myself and my kid and my stuff into the car, hard to make coffee, hard to motivate. It must be the rain. Yes, that’s it. I’m suffering from shock after Seattle’s 85-day streak of gorgeous weather has (quite spectacularly) ended.

Months ago, I agreed to be part of The Oxbow Box Project, an effort on the part of Oxbow Farm to get the word out about their CSA box. In theory, it’s easy: They give me one of their weekly CSA boxes, brimming with produce, and I see what happens with it in my kitchen. Only, my pick-up day was the first day of The Rain. Stars crossed. The parking gods frowned. I dragged a cantankerous child to the pick-up, and the contents of that boisterously-colored box went into the fridge without a smidgen of ceremony. The next day, I painted mascara over my bad humor, got on an airplane, and flew to New York, hoping the vegetables would remember me when I returned.

Here’s the good thing about fall vegetables: They’re very patient, and they don’t hold a grudge. They don’t mind if you skip the warm reception, or if you go out of town. When I got back, the squash was still firm, and the collards and chard were still bright and perky. I sliced long radishes for a snack, and twirled pasta up with softened leeks, bacon, and shaved radicchio. This morning, I had roasted yellow beets for breakfast, like it was the most normal thing in the world.

There are still squash and potatoes and chard waiting for me, but last night, before I sat down to finish the email, there were carrots. To me, carrots always seem easy. Split in half lengthwise, tossed with whole-grain mustard, and decorated with fresh dill, these are a favorite from Dishing Up Washington. Save them for Thanksgiving, if you want, because they’re unfussy. (A dish like this is happy waiting on the counter, uncooked, for a few hours, and they taste perfectly lovely at room temperature.)

Or roast them soon, on a rainy night, when things feel hard but you know they really aren’t. (Tell me I’m not the only one who gets all dramatic when it rains.) You can float the back of your hand over your forehead and pretend you slaved over them. You can make up something complicated about what you did to get them to caramelize, dark and sweet, on each cut side. But you’ll know, deep down, that they’re just roasted carrots with mascara on–carrots with a mustardy little kick in the pants that elevates them from random root vegetable to elegant success story.

Nash’s Organic Produce in Sequim is known for its sweet, crunchy Nantes carrots, which grow particularly well in cool climates and the alluvian soil that covers the northeastern portion of the Olympic Peninsula that Nash’s calls home. Roasted, they become even sweeter.
You can cut the tops off the carrots entirely, if you’d like, but I prefer to leave about ¾ inch untrimmed — I like how the little green sprouts look, and they’re perfectly edible.

2. Mix the carrots, oil, mustard, and salt and pepper to taste together in a casserole dish large enough to hold the carrots in a single layer. Turn the carrots cut sides down, and roast for 25 to 30 minutes, until tender.

3. Sprinkle the dill on top, pile the carrots into a serving dish, and serve immediately.

Like any parent, I always expected that some of the values that form the crux of my existence would be passed down to my child in the womb. A penchant for bad puns. A love of good food. A general sense of direction in any kitchen. Don’t get me wrong: I never wanted to breed my kid to be a Michelin-starred chef. I just sort of expected that any child of mine would be baking his own birthday cupcakes by second grade.

That doesn’t seem likely. Ever since my son Graham was born seven weeks early, he’s progressed slowly in almost every way. It took him 29 days to learn how to eat. He began to crawl a full year later than most kids. He was waaaay behind his peers when it came to sticking his fingers in electrical outlets. Ditto for throwing food. And today, at nearly three years old, he still can’t stand on his own. So in our little red leather notebook—the one that starts with a list of my first trimester food cravings—we record inchstones, not milestones.